Why is advice so vague?
Posted , 3 users are following.
I have been suffering from Lyme for over 20 years now and have tried a variety of remedies with varying degrees of success. The conventional advice for chronic Lyme seems vague to say the least - for example the NHS site says 'It's not clear why this happens to some people and not others. This means there is also no agreed treatment.' It then goes on to state that you should consult your doctor if symptoms persist. Other 'approved' sites are no more helpful offering bland advice about eating healthily etc. It is no wonder that sufferers turn to non-conventional methods in desperation. Personally, I have tried MMR, silver and herbal treatments. I now intend to try a prolonged course of antibiotics but I don't hold out much hope because it didn't seem to work at the acute stage. What is needed is a scientific study of the efficacy of treatments. Maybe one day.....
1 like, 3 replies
bob73443 david41094
Posted
David,
As you say -- maybe one day.
My wife is also a chronic sufferer. She's found a local Lyme specialist, and they've been working together now for at least 5 or 6 years. Although nothing seems to work "perfectly," my wife does go on a dose of doxy for about 5-6 days every time her Lyme symptoms appear (which is about once every 6 weeks). It does help her.
She also has been tested for Bartonella AND Lyme routinely -- because in the earlier years no-one was SURE that it was either of the two that were causing so much pain. But every time she was in pain, the Bartonella and Lyme tests came back "high."
Nothing gets patients madder than to be told "there is no such thing as chronic Lyme," and yet we continue to hear it all the time don't we. But just as in other mysterious illnesses, I think that there are so many cases like these popping up that eventually something different will happen.
Until then....
david41094 bob73443
Posted
Thank you so much for your response Bob. I had 10 years of unremitting misery and wouldn't be here but for my children. I now have up times and down times with a tendency for the down times to be in the winter. It is during the down times that I search desperately for a miracle cure (who wouldn't?). My inclination is to go with conventional medicine which is subject to scientific rigor but there is no concrete advice out there so patients like me inevitably grasp at straws. As I said, I am going to give a prolonged course of Doxy a go - anything to ease the pain.
I wish your wife all the best.
Yvonne470 david41094
Posted
Hi David
I am getting tested for LD this week 😕
From what I have read from research is that, LD is that not many gp's know about it and it is an awkward thing to diagnose, as the symptoms mimic so many other health issues, tis like placing a bet at the roulette wheel and keeping your fingers crossed that someone in your medical team, will spot it that knows more about LD. I do hope you get help soon.